When their child is first diagnosed, parents may have a variety of feelings, including fear, grief, uncertainty, and “information overload.” They may also feel relieved that there is finally a diagnosis for the problems their child has been having.
Over time, parents may also feel frustrated, isolated, emotional and psychological stress, and worn out. Many services are available to help parents cope, including respite care, counseling, funding, and support groups. There is no single “best choice” for everyone, but here are some suggestions on approaching the challenges of parenting a child with MPS I:
Parents should try as much as possible to treat their child with MPS I and siblings like any other child. While recognizing that children with MPS I do have special needs, it is important that parents encourage them and their siblings to participate in activities that involve other children of the same age.
Many parents are reluctant to set the same kind of limits and responsibilities for affected children as they do with their unaffected siblings. However, just like other children, children with MPS I need discipline and responsibilities from parents according to their ability.
Children typically prefer daily routines that are predictable and consistent. Although this is not always possible while juggling medical visits and the demands of family life, identifying areas and times for routines that fit your family situation may help provide a sense of stability for both you and your child.
Caring for a severely affected child is hard work. Parents need a break to rest and enjoy activities, and this may not be possible when their child with MPS I is with them. Brothers and sisters also need their share of attention, and to be taken on outings that may not be feasible for the child with MPS I. Many parents use some form of respite care or have someone come in regularly to help at busy times. More mildly affected individuals may need help to become more independent from their families and may benefit from a vacation, perhaps with others who have disabilities.
The MPS society may be able to match you up with families who have volunteered to share their experiences and offer emotional support to other families affected by MPS I. Some families have created websites to share their experiences with others.
Although they may not have experience with MPS I, these are the people who care about you and would like to help. Keep in touch with your “support network” on a regular basis. Think of a few specific things they could do to help you, such as just coming over to talk, running some errands for you, or babysitting.
May 15th is International MPS Awareness Day. Join Sanofi Genzyme as we support raising awareness of MPS disease disorders and honoring the individuals and families who are affected.